Creating and Implementing a Community Engagement Strategy for the 2022–2027 Illinois Comprehensive Cancer Control Plan Through an Academic–State Public Health Department Partnership

Introduction Comprehensive cancer control (CCC) plans are state-level blueprints that identify regional cancer priorities and health equity strategies. Coalitions are encouraged to engage with community members, advocacy groups, people representing multiple sectors, and working partners throughout the development process. We describe the community and legislative engagement strategy developed and implemented during 2020–2022 for the 2022–2027 Illinois CCC plan. Methods The engagement strategies were grounded in theory and evidence-based tools and resources. It was developed and implemented by coalition members representing the state health department and an academic partner, with feedback from the larger coalition. The strategy included a statewide town hall, 8 focus groups, and raising awareness of the plan among state policy makers. Results A total of 112 people participated in the town hall and focus groups, including 40 (36%) cancer survivors, 31 (28%) cancer caregivers, and 18 (16%) Latino and 26 (23%) African American residents. Fourteen of 53 (26%) focus group participants identified as rural. Participants identified drivers of cancer disparities (eg, lack of a comprehensive health insurance system, discrimination, transportation access) and funding and policy priorities. Illinois House Resolution 0675, the Illinois Cancer Control Plan, was passed in March 2022. Conclusion The expertise and voices of community members affected by cancer can be documented and reflected in CCC plans. CCC plans can be brought to the attention of policy makers. Other coalitions working on state plans may consider replicating our strategy. Ultimately, CCC plans should reflect health equity principles and prioritize eliminating cancer disparities.


Introduction
Comprehensive cancer control (CCC) plans are state-level blueprints that identify regional cancer priorities and health equity strategies. Coalitions are encouraged to engage with community members, advocacy groups, people representing multiple sectors, and working partners throughout the development process. We describe the community and legislative engagement strategy developed and implemented during 2020-2022 for the 2022-2027 Illinois CCC plan.

Methods
The engagement strategies were grounded in theory and evidencebased tools and resources. It was developed and implemented by coalition members representing the state health department and an academic partner, with feedback from the larger coalition. The strategy included a statewide town hall, 8 focus groups, and raising awareness of the plan among state policy makers.

Results
A total of 112 people participated in the town hall and focus groups, including 40 (36%) cancer survivors, 31 (28%) cancer caregivers, and 18 (16%) Latino and 26 (23%) African American residents. Fourteen of 53 (26%) focus group participants identified as rural. Participants identified drivers of cancer disparities (eg, lack of a comprehensive health insurance system, discrimination, transportation access) and funding and policy priorities. Illinois House Resolution 0675, the Illinois Cancer Control Plan, was passed in March 2022.

Conclusion
The expertise and voices of community members affected by cancer can be documented and reflected in CCC plans. CCC plans can be brought to the attention of policy makers. Other coalitions working on state plans may consider replicating our strategy. Ultimately, CCC plans should reflect health equity principles and prioritize eliminating cancer disparities.

Introduction
Comprehensive cancer control (CCC) plans are blueprints that identify region-specific cancer priorities and health equity strategies to address cancer prevention and control (1)(2)(3). The Centers for Disease Control and Prevention's (CDC's) National Comprehensive Cancer Control Program, established in 1998, supports CCC development and provides funding, guidance, and technical assistance to US territories and freely associated states, the District of Columbia, and tribes and tribal organizations, to design and implement plans (4). Plans guide cancer prevention and control activities with the goal of reducing cancer incidence and death rates by addressing all parts of the cancer continuum (1)(2)(3)5). Although including goals, objectives, and strategies is standard across plans, each plan is unique to its region, and content varies in scope, priorities, and length.
Statewide coalitions are responsible for creating CCC plans, and these plans generally span a 5-year period (3). When working on the development of CCC plans, coalitions are encouraged to engage people with diverse perspectives, such as community members, advocacy groups, people representing multiple sectors, and working partners (1,2,(5)(6)(7). Meaningful community engagement can advance cancer health equity by informing practice, research, and policy with input from people who are typically marginalized and by identifying community-aligned solutions (8).
The Illinois Department of Public Health received funding from CDC to administer the Illinois Comprehensive Cancer Control Program and develop the 2022-2027 Illinois Comprehensive Cancer Control Plan in collaboration with its statewide coalition, the Illinois Cancer Partnership (ICP). The plan identifies how the state will address cancer with a focus on reducing cancer incidence and death rates through prevention, screening, early detection, and diagnosis, treatment, and survivorship, all with health equity-focused activities and strategies. A new addition to the 2022-2027 Illinois Comprehensive Cancer Control Plan is a robust, multipronged community engagement approach.
We describe the community engagement strategy developed and implemented for the 2022-2027 Illinois Comprehensive Cancer Control Plan. This model can serve as a blueprint for other statewide cancer coalitions working on their own CCC plans.

Methods
The process to develop a community engagement strategy for the 2022-2027 Illinois Comprehensive Cancer Control Plan began with a meeting in October 2020 between the state health depart-ment partner and the academic partner ( Figure 1). The goal of this meeting was to create a partnership that used a health equity lens to engage diverse community members and discuss the resources and assets that each partner was able to provide. Partners identified the following goals, which guided all subsequent activities: • Goal 2: Elicit community feedback on the plan's goals and objectives, focusing on addressing cancer inequities in Illinois.
• Goal 3: Raise awareness of the development of the plan among Illinois legislative and community members, coalition members, and others with a vested interest in addressing cancer needs in Illinois.

•
The partners completed a partnership agreement template (Appendix) to establish ground rules for collaboration and determine desired level of collaboration, based on the Collaboration Spectrum Tool (9). The levels of partnership include cooperate, coordinate, collaborate, and integrate. The agreement summarized mutual benefits and described alignments with each partner's strategic priorities, guidelines for authorship, and partners' roles and scope of work ( Figure 2) (9,10).

Implementation of the community member engagement strategy
By consensus, partners determined that the community engagement strategy would include a virtual town hall meeting and a series of 8 virtual focus groups. The overall objectives of the town hall and focus groups were to identify 1) cancer-related problems, barriers, and gaps that people in Illinois experience; 2) solutions, facilitating factors, and strengths to address the problems; and 3) funding priorities. The town hall was hosted first, followed by the 8 focus groups that delved deeper into topics about health equity and cancer disparities.
The University of Illinois Institutional Review Board reviewed an application for the determination of human subjects research and granted this project (protocol no. 2020-1552) a formal Determination of Quality Improvement status.

Recruitment and eligibility
We recruited participants for both the town hall and the focus groups primarily through flyers sent via email to the academic and state health department partner networks throughout the state. In addition, flyers were distributed to the ICP listserv of approximately 600 people, including health practitioners and administrators from city, county, and state health departments, and hospitals and community health centers; representatives of cancer advocacy organizations; cancer survivors and caregivers of cancer patients; and researchers and clinicians, all of whom were encouraged to distribute the flyers through their own networks and social media.
The town hall was held during the day in January 2021 and was open to all interested adults residing in Illinois; online preregistration was required. People who completed the registration process received a follow-up email with a link to the meeting, followed by at least 2 reminder emails. We asked town hall participants to in-dicate their sex, race and ethnicity, whether they were a cancer survivor or caregiver for a cancer patient, and affiliation (eg, community member, hospital, government agency). We did not ask town hall participants to indicate age, health insurance coverage, preferred language, or residence (rural vs urban).
For the focus groups, held in March and April 2021, we used purposive sampling methods to select participants to ensure broad representation based on race and ethnicity, cancer survivors and caregivers, health insurance status, and residence (urban vs rural). Potential participants completed a registration form, which included questions on demographic characteristics (race and ethnicity, sex, age, preferred language, and rural vs urban residence). Rural or urban residency was based on the person's perception of place and not a specific classification system. People were not required to participate in the town hall to sign up for focus groups. Several focus groups were offered in the evening or during the weekend to promote participation among those who may not have availability during the week.

Town hall and focus group procedures
The town hall and focus groups procedures were organized and aligned with CDC's Community Health Assessment and Group Evaluation (CHANGE) Action Guide (11) and the Center for Community Health and Development at the University of Kansas' Community Tool Box (12), both of which provide guidance and best practices for engaging with community members to understand and assess health disparities.
The academic partner developed semistructured moderator guides for the town hall and focus groups ( Table 1). The moderator guides were based on a model for the analysis of population health and health disparities (13), which incorporates a multilevel lens to understand factors that contribute to health disparities: fundamental causes, the social and physical context, individual demographics and risk factors, and biologic responses and pathways.
The town hall, which included a breakout session, was hosted by the academic partner and lasted 90 minutes. It was used as an opportunity to raise awareness of the cancer control plan and recruit focus group participants. The town hall began with introductions from the state health department and academic partners. Participants were randomly assigned to 1 of 5 breakout rooms to delve into specific cancer-related topics, with a facilitator and notetaker from the academic partner in each room. After the breakout sessions, participants returned to the town hall and were invited to complete online registration for a focus group.
The academic partner hosted and facilitated the focus groups in March and April 2021. Of the 8 focus groups, 3 were for the general population and each of the other 5 was tailored for a specified PREVENTING CHRONIC DISEASE VOLUME 20, E69 PUBLIC HEALTH RESEARCH, PRACTICE, AND POLICY AUGUST 2023 The opinions expressed by authors contributing to this journal do not necessarily reflect the opinions of the U.S. Department of Health and Human Services, the Public Health Service, the Centers for Disease Control and Prevention, or the authors' affiliated institutions.
group: rural residents, cancer survivors, young cancer survivors, cancer caregivers, and Spanish speakers. All focus groups were recorded and lasted from 75 to 98 minutes (mean, 83 min). On average, each group had 7 participants (range, [5][6][7][8][9][10]. Participants received a $40-equivalent gift (gift card, electronic code, or digital payment) to acknowledge their time and effort and decrease barriers to participation. Before the town hall and focus groups, the academic partner held 3 one-hour training sessions for facilitators to review the basic principles of conducting qualitative data collection, building participant rapport, asking good questions and probes, and managing group conversations.

Analysis of data from town hall and focus groups
The town hall was not recorded because of technical problems in using breakout rooms in the Zoom platform, but a notetaker was assigned to the main town hall Zoom room in addition to the notetakers in the breakout rooms. Immediately after the town hall, the facilitators and notetakers reviewed and discussed notes, organized them topically, and listed key themes.
All focus groups were recorded via Zoom. Before analysis, all focus groups were transcribed, checked for accuracy, and deidentified. We used Dedoose version 9.0.18, a web-based qualitative data software application to conduct analysis. Members of the analytic team (L.C., C.H., B.S.) used content analysis procedures and developed a codebook to identify themes and subthemes. The final codebook consisted of 58 codes. Finally, themes were organized according to the model for analysis of population health and health disparities (13), and sample quotes were extracted to illustrate themes.
At the time of the focus group and town hall, the ICP had already drafted the goals, objectives, and strategies to be included in the 2022-2027 Illinois Comprehensive Cancer Control Plan. The ICP reviewed the major themes identified by the analysis of data from the town hall and focus groups and revised the plan according to this analysis.

Implementation of the legislative body engagement strategy
The academic partner, in consultation with the ICP and the state health department partner, initiated engagement with the Illinois legislative body by drafting a resolution to raise awareness of a state cancer plan and the development of the 2022-2027 plan. A resolution is a statement of opinion that does not have the force of law. Because of rules and laws about lobbying, the state health department partner was not permitted to engage with the legislative body. The academic partner, in consultation with their institution's vice chancellor for health affairs office, whose function is health affairs advocacy and government relations, created the initial draft of the resolution. The draft was then shared with the ICP for input, which was incorporated into the final version. Next, the academic partner, in collaboration with the vice chancellor for health affairs office, contacted the American Cancer Society's director of government affairs for Illinois to leverage their expertise in advocacy and policy work. The academic partner facilitated a meeting between the vice chancellor for health affairs office and the American Cancer Society, wherein it was decided that the next step would be to engage the Illinois Joint Legislative Cancer Caucus to seek support for adoption of the resolution. Finally, a schedule to contact the chair of the Cancer Caucus was set to align with the state's legislative session calendar.

Major themes from town hall and focus group analysis
Participants in the town hall and focus groups described factors that contribute to cancer disparities among people in Illinois.
The town hall participants discussed the importance of understanding and addressing health disparities broadly and specifically to cancer throughout the CCC plan. One town hall attendee stated, "Cancer affects everyone but not everyone equally." Determinants of health, such as access to food, safe physical activity, transportation, health insurance coverage, access to health care providers (including specialists), treatment options (including second opinions and clinical trials), and knowledge about health, health care systems, and available resources were discussed extensively, especially as they pertained to racial and ethnic groups and immigrant status in Illinois. Participants also discussed how access to transportation and cancer care resources (ie, patient navigators, specialty care), the digital divide, and exposure to environmental hazards depend on where one lives in Illinois. They recommended PREVENTING CHRONIC DISEASE that the plan include education and awareness of multiple cancer types; highlight the importance of early detection, patient navigation, and collaboration with health systems and organizations; and ensure that goals and objectives are realistic and attainable. Finally, the COVID-19 pandemic was a major topic of discussion, especially concerns about exposure among cancer patients and survivors and disruption of the health care system and cancer care.
Key themes from the focus groups largely mirrored those from the town hall (Table 3). Overall, the lack of a comprehensive health insurance system in Illinois and discrimination based on race and ethnicity and immigration status were identified as being the primary policy and social conditions that contributed to cancer disparities across the cancer continuum. Concerning the institutional context, lack of access to quality systems and services was a recurring theme. Concerning the physical context, participants discussed the importance of where one lives and how place relates to community and individual health outcomes. Specifically, participants discussed environmental hazards, internet access and the digital divide, transportation, and food insecurity as subthemes. Access to health care and transportation challenges were noted among both rural and urban residents, although we found nuanced differences. For example, rural residents talked more about a lack of medical facilities overall, and urban residents talked more about access in terms of quality of care. Furthermore, urban residents noted access to supports and resources that are available to people living in an urban center, whereas rural residents often discussed a lack of resources to address needs across the cancer continuum (ie, education and prevention resources, care navigation services, innovative diagnostic and treatment care, and survivor peer and social support).
Focus group participants also discussed the importance of the social context and how factors such as community poverty, residential segregation, and inadequate social networks contribute to cancer disparities in the state. Rural residents noted their large aging populations and discussed age-related challenges. Participants discussed the effect of individual-level risk factors and health behaviors on cancer disparities, but when they mentioned these, they typically connected these factors with the social and physical community contexts that shape behavior, such as access to resources, safety, and engagement in physical activity.

Recommendations and funding priorities to improve health across the cancer continuum
Participants in the town hall and focus groups recommended policy and systems, clinical, community, and individual-level strategies and funding priorities to address cancer disparities in Illinois. The recommendations spanned the entire cancer care continuum, from prevention, screening, diagnosis, and treatment to survivorship and palliative care. The primary policy concern was ensuring that all who need cancer care are able to receive it, regardless of cost and ability to pay. Clinical-level recommendations to address cancer disparities included access to patient navigation, improved patient-provider communication, and training for health care providers. Community-level recommendations included increased access to community navigators, ensuring that transportation needs are met for both rural and urban communities, and addressing food insecurity by establishing food depositories throughout the state. Finally, individual-level recommendations included the need to increase awareness and education opportunities about cancer.
Town hall and focus group participants shared their ideas about how funds should be prioritized in Illinois to address cancer. First, they noted that community organizations, especially those addressing cancer disparities and working collaboratively, should be prioritized for funding. They also suggested prioritizing funding for cancer prevention and research; programs that provide social, emotional, and educational support; and patient navigation services. Finally, participants mentioned that funding needed to be spread out across different types of cancers.
The complete report on the results of the town hall and focus groups can be found in the 2022-2027 Illinois Comprehensive Cancer Control Plan (14). The report incorporated participant quotes to support specific goals, objectives, and strategies. In addition, 8 infographics were created to support dissemination (15).

Legislative members engagement strategy
The chair of the Illinois Joint Legislative Cancer Caucus agreed to be the primary sponsor of Illinois House Resolution 0675, the 2022-2027 Illinois Comprehensive Cancer Control Plan (16), and garnered cosponsorship from other legislators. The resolution, adopted on March 15, 2022, approximately 1 month after it was filed, urged all legislators to support and promote the plan to address 3 priority areas (prevention; early detection and screening; and diagnosis, treatment, and survivorship) by engaging, educating, and empowering constituents through community engagement. The resolution discusses social determinants of health and recognizes the need to address cancer health equity and eliminate health disparities by providing a framework for strategies and interventions that address structural and systemic barriers.

Discussion
We implemented a robust community engagement strategy through a successful state health department-academic partnership.  (17), Nebraska (18), and Tennessee (19) used town halls and focus groups to understand community priorities What is unique about the community engagement approach is that it is explicitly centered in health equity theory, which promotes understanding cancer concerns at multiple levels. Relatedly, many states have described using collaborative approaches that involve multiple partners. However, many descriptions lack details about the various roles and responsibilities involved in planning. Our work described and delineated unique and shared roles and responsibilities of academic and state health department partners.
Using community engagement approaches ensured that the Illinois plan reflects the voices of people affected by cancer in Illinois and the diverse needs and assets in the state. Our approach was guided by public health models of engagement and theoretical models of social determinants of health (11)(12)(13). This approach emphasized understanding and addressing not only the role of individual-level risk factors and behaviors in cancer health disparities but also the role of fundamental causes and physical and social contexts. This approach may also be considered for creating strategic plans to address other chronic conditions.

Limitations
Our community engagement strategy has several limitations. First, we did not have a transcription of the town hall meeting, so we were unable to review verbatim comments. However, the academic partner had notetakers for the town hall and for each breakout room. Second, recruitment focused on ensuring representation of participants by rural and urban residence, health insurance status, and race and ethnicity. Thus, the perspective of some populations (eg, men, people with gender identities other than male or female) may be limited. Coalitions could consider recruitment strategies that take this limitation into account. Third, we used self-reported information on rural residency, and a participant's perception of rural residency may not match an objective measure. However, we wanted to acknowledge the validity of lived experiences. Finally, because of the timing of our work and the COVID-19 pandemic, we were unable to have in-person events. Although virtual focus groups have some advantages, such as mitigating travel challenges and reaching diverse populations, virtual modalities are less likely to reach people without access to or the capacity to use technology (20,21).

Conclusion
We recommend that the ICP and other coalitions working on cancer plans develop strategies to include community members in the development of plan goals, objectives, and strategies. Although the 2022-2027 Illinois Comprehensive Cancer Control Plan considered community feedback before these elements were finalized, soliciting this input at the onset would have increased community engagement and participation.
Our community engagement strategy reflects a process through which the expertise and voices of community members can be documented and reflected in state CCC plans. We highlighted a mechanism through which plans can be brought to the attention of legislators. Other coalitions working on their state's plans could consider replicating some or all of our strategy. Ultimately, plans should reflect principles of health equity and prioritize the elimination of cancer disparities.

Acknowledgments
We extend our gratitude to the community members in Illinois who shared their stories and contributed to this work. We also thank the following people for their efforts in planning and implementing the town hall and focus group: Sarah Christian, MPH; Yohana Ghdey, MPH; Jeanette Gonzalez, MS; Le'Chaun Kendall, MPH; Nasima Mannan, MPH; and Ana Williams, MPH, MHA, DDS. Finally, we thank members of the Illinois Cancer Partnership for supporting community engagement efforts for the 2022-2027 Illinois Comprehensive Cancer Control Plan.
The community engagement strategy activities (town hall and focus groups) were supported by the University of Illinois Cancer Center. Funding for the 2022-2027 Illinois Comprehensive Cancer Control Plan was provided by CDC grant DP17-1701 through the Illinois Department of Public Health. The authors take full responsibility for this content and did not receive honoraria or disclose any relevant financial relationships. No copyrighted tools or other materials were used in this research or article.